This is a blog to chronicle the fabulous life of Connor Robertson. Despite the medical challenges that Connor faces at the moment he is a fighter. As his devoted & loving parents we want to see Connor enjoy all the adventures of life. With the wonderful support & love of our family & friends we intend on giving "our little bug" every opportunity in the world. We invite you to join us as we experience the journey together. May God be glorified in our chronicle of Connor's Adventurous Journey!

Saturday, September 30, 2006

Little Bug remains stable while still on the breathing tube and an awful lot of sedation. He hasn't been awake at all in the past couple of days and that is the plan until he goes in for surgery next week. I am home with the stomach flu the past 2 days and feeling pretty lousy. I am hoping to feel stronger tomorrow and get back to the hospital. We have numerous conversations throughout the day with Connor's nurses and he seems to be doing fairly well, considering all that is going on in his little body right now.

I know you've all been wanting an update and I wish I had more to report, but we are sort of floating along until surgery day. We will update more tomorrow after we spend time with Little Bug.

Thursday, September 28, 2006

Morning came early again when our pager went off before 6:00am. We quickly got to the phone and spoke with Dr. Badden and he informed us that Connor had had a pretty fretful night. He lost his IV access and they had to put another IV in his head. His breathing was pretty rapid as well in the early morning hours and he dropped his oxygen level down into the 20's. They found on X-ray early this morning that his right lung had collapsed and it was then that they made the decision to put the breathing tube in and give him a break. He is now on the ventulator and completely sedated. They had to send him into Interventional Radiology today as well to have a PIC line inserted. This is basically a central line for all of his iv's and medicine and additional fluids, if required.

Once again, Little Bug is one sick little guy. He needs our continued prayers for his healing. We should find out either tomorrow or Monday when he will be scheduled for surgery. Sorry for the quick post of just the facts, but quite frankly, it's all I have in me at the moment. Thanks for all your encouragement and love!!!!

Wednesday, September 27, 2006

As Randy reported earlier today, Connor's heart rate had come down significantly in the morning and mid-morning hours. It has, however, risen again with his level of distress. We've been meeting with the lung specialist's and the GI specialists and the gerneral surgery team and the cardiac team the past couple of days and the bottom line is this.....it looks like we're headed back to the OR. The general surgeon believes that the hiatal hernia that Connor has is defined enough to be causing him distress so they would like to get that fixed. They also have known, for months now, that the Nissen Fundoplacation that he had done has failed by 50%. They would also like to re-do the wrap on that to see if it will relieve any of Connor's "suspected" reflux. The surgeon mentioned that they will not be able to do this one laproscopically because they will not be able to see as much that way. What will end up happening is they will extend his open heart surgery scar at the bottom of his sternum and continue it all the way past his belly button. Once they have him opened up they feel that they will be able to get a better picture of what is going wrong with his basic anatomy and hopefully be able to fix and repair the problems they find.

To be quite honest, I am glad that there is a plan in place, but we are also aware that it is not a for sure fix of anything. It could very well be a shot in the dark. We certainly hope that it will provide Connor with the relief that he needs, but I think we'll believe it when we see it. Connor also has to get well enough to even go in to the OR. Today they put him on an antibiotic that they hope will begin to kill whatever is attacking his lungs and airway.

We tried him off the c-pap for about 30 seconds today and he simply cannot handle it. He immediately became agitated and dropped his oxygen dramatically. They are continuing to sedate him because once he wakes up, he is fighting to get that c-pap off his face and he has a very difficult time getting settled down. My oh my it is difficult to see Little Bug in such a state once again. We had so hoped these days were behind us, but we know now that this is the way things are going to be until we can get to the bottom of it. We are frustrated and tired, yet hoping and trusting for the very best for Connor. We came home tonight to regroup and get some rest. I will head back to the hospital tomorrow morning and I pray that my outlook and perspective will resemble something more positive than it has been the past couple of days.

Dear Lord, Please cradle our sweet Little Bug this evening when we are so far away. May he hear your sweet voice beckoning him closer to your heart. May the angels sing to him and keep him company in his sleep. May your strong, healing hands cover each area of discomfort and bring him healing and peace. Surround his room with the gentle wind of your spirit and may all who enter be blessed by our fearfully and wonderfully made little boy. We thank you for our son, he is a gift from you and we cherish him with all of our hearts. Please take away his pain and let him be the little boy he so desparately wants to be.....happy & healthy and living at home. If it be your will dear Lord, please grant our requests and heal our son!! Amen.

Well "Littlebug" missed Children's Hospital so much he just had to come back and try out his favorite toy.....yes...the infamous "elephant nose"!!!! But earlier this morning his high heart rate finally broke. His stats are looking much better now...heart rate 117!!! Yippie...Daddy and Mommy feel much better now!!! We'll try to keep you posted as much as possible.

Monday, September 25, 2006

Morning came early today as I awakened to the sound of the telephone ringing at 5:45am in my sleeping room. Sure enough, Little Bug was in significant distress and the respitory team was making the preparations to put the breathing tube in. After talking with the doctor on the phone they decided to give Connor a chance to settle down instead of making a rash decision. After I arrived in his room, he calmed down a bit and he squeaked by, once again, not getting the breathing tube inserted. He is skating a very fine line. His X-rays are showing a bit of haziness on the right side, which could possibly be a bacterial pnemonia. They aren't committing to anything yet, but that is what they suspect. He is quite puffy today and breathing really fast. I am waiting to talk with the docs after rounds to see what the plan is going to be for Little Bug.

I will update more once I have information. Please say a prayer for Randy today as he is at the squadron doing a check ride on the C-17. He takes off at 11:00am and will be up in the air for about 4 hours. He has studied and prepared properly so I know he'll pass with "flying colors" HA HA!!!! Go get 'em honey.....Show 'em what you're made of!!!! Little Bug and I are praying for you to do great!!!!

Sunday, September 24, 2006

Lori and I just walked into Littlebugs ICU room and we were both amazed and worried!!!! This is not the little boy we had in our home 2 days ago! It's as though he can hardly breath! So bad that they are contemplating putting him back on the ventilator...AUGH!! He's on the C-pap now but that doesn't seem to be doing the trick...... we don't know what's up? So please pray for our "Littlebug" and for the doctors to have wisdom to solve whatever this is?

Well, I am sad to report that Saturday Connor ended up back at Children's Hospital. He seems to be following a pattern. He has been in-patient at Children's for the first day of Spring, the first day of Summer and now the first day of Fall. What frustration we feel as we see him lying there once again in distress. After many days of struggles I took him into the pediatrician's office early Saturday morning because he was breathing really fast and his color looked horrible. Sure enough everything was elevated and his oxygen levels were in the mid 50's. They sent him by ambulance to the ER at Children's and I had to follow by car. This was the first time that I was separated from Connor during the hectic transport. What a long trip that was up to Seattle and on top of everything I got stuck in horrible traffic. He is now in the ICU once again, and they are running all kinds of tests to see if this is a respitory illness or if something else is going wrong.

We would ask for your continued prayers for Little Bug as he struggles along this next leg of the journey. Please pray for our strength and endurance as well. This life of hospital living is really taking a toll on us. Thanks for all your encouragement and support.

PS ~ During all the hectic moments with Connor, we did manage to finally get to the doctor and get an ultrasound of the new baby. We are officially 12 weeks along and baby is very active. Due date should be right around the 7th of April.

About Me

Hi my name is Connor Scott Robertson. I was born on January 11, 2006. My daddy is a pilot and I think that is so cool. My mommy gets to stay home with me which I think is super neat because we snuggle and cuddle alot. I was born with a special set of circumstances that require me to get some extra special attention from my doctors. I have Down Syndrome and a heart defect called an AV Canal. I have had a pretty eventful 1st year of life. I have been hospitalized most of the time and have spent alot of time in and out of doctors offices. Even though I have had a lot of difficulty so far, I am quite a fighter. My folks say I can do anything I put my heart and mind to and I believe them, because I am fighting really hard to become a big strong boy. Would you all take the time to say extra prayers for me? I know that God listens to our prayers and I believe he will answer our prayers to bring healing to my body. Can't wait to meet you all and have you watch me grow to be a mighty man of God one day.